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Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
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How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
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Unsafe Gluten-Free Food List (Unsafe Ingredients)
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How Many People That Are Diagnosed In This Forum Are African-American/black/hispanic/asian Or Any Other Ethnicity?

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I'm not sure where this should go...I am just so bothered by the fact that doctors believe that it's impossible for people of other ethnicities to have Celiac Disease. That makes people in that community unaware, to a point where they don't even care or even believe that themselves. While Vitamin D-deficiency is everywhere, it's very prevalent in African-American women. I almost wish I could put together screenings/blood tests for African-American/Hispanics/Asian/non-White community just to prove to some dense doctors how common it may be.

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They are starting to find that people of different ethnicities can have this problem.And people in America have all sorts of backgrounds. They shouldn't be using skin color to determine celiac. Maybe try typing in different races then celiac or gluten intolerance in a search engine. Find articles that come from reputable sources and take them to the dr. If you try a gluten free diet and you feel better you really don't need the dr's opinion. A lot of us on here have learned this. It does help to have proof from tests and all but your tests can still come back negative. Even people that fit into the "celiac profile" have trouble getting diagnosed so try not to feel too bad. Good luck to you!

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I could not look more "caw kaze shun" but I am part indigenous aka "got here a little earlier." Females of this group tend to have higher rates of auto immune diseases. You'd think that with the caw-kaze-shun being northern European/Irish (and my married name being that, conveniently adding to the whole identity as perceived ) this would have been considered earlier, but heck no. I was sent on my journey exploring the possibility by a random comment on an internet social board.

There is no such thing as a "purebread" human.

It's not only the doctors. When I find people in the real or on-line world with matching symptoms, I gently suggest they consider gluten free as an option, only to be frequently told that they "tried" the diet once, and it made no difference, so they can't possibly have it, because their doctor told them they have (fill in the blank, usually fibro or IBS). People get into their cocoons medicating themselves with beer or junk food or prescription meds or whatever, and they aren't going to come out, but they are always complaining how sick they are at the same time.

It's a real good question Nicole. Just about everything we thought was known on celiac 50 years ago has been shown to be wrong. It's not one in 10k people, it's 1 in 133. And you don't outgrow it. And it's not only a children's disease. And it's not only a Northern European disease either.

But IBS is an easy answer that doesn't take much effort. Someday maybe it will change. My understqnaqding is the genes in celiac are part of a cluster of genes that are linked to lots of auto-immune diseases. So there could be more things learned because of that. I think they ought to do the celiac blood panel on anyone that is suspected of having IBS or any auto-immmune disease. That might catch more cases.

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It's a real good question Nicole. Just about everything we thought was known on celiac 50 years ago has been shown to be wrong. It's not one in 10k people, it's 1 in 133. And you don't outgrow it. And it's not only a children's disease. And it's not only a Northern European disease either.

But IBS is an easy answer that doesn't take much effort. Someday maybe it will change. My understqnaqding is the genes in celiac are part of a cluster of genes that are linked to lots of auto-immune diseases. So there could be more things learned because of that. I think they ought to do the celiac blood panel on anyone that is suspected of having IBS or any auto-immmune disease. That might catch more cases.

My mother was diagnosed with "IBS" almost 10 years ago. As an African-American woman who is not in denial about the possibilities of having Celiac disease, it pains me that I can't get the people in my family with identical issues to get tested. One aunt has agreed to be tested when she goes to the doctor next week. When I talked to my cousin, who a couple of months ago had a tanked Vitamin D level of 6, and is having serious neuropathy issues, hyperthyroidism, and high blood pressure, asked me did I want them to be tested to make me feel better. I was like, no, to make YOU feel better. People are so set in their ways.

I think you need to take a little time to learn about DH and celiac disease. Celiac and DH are technically autoimmune disorders. This is about DH:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
Learning about celiac disease (overview):
https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/
Testing for celiac disease via blood test:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
I think the full panel is around $400 and the basic budget screening which is pretty darn good (TTG IgA) is under $100.
If you are paying for your medical care (even under insurance) you have the RIGHT to copies of everything. So, when your doctor orders a lab test, ask for a copy of the order, so YOU know what he is ordering. Then you can google to see if he/she is ordering the right things. Get a copy of the results. Get a copy of the costs/receipt if you are paying out of pocket. Put your requests in writing.
I think some labs and doctors use the term for gluten allergy incorrectly. 1. There is a wheat allergy (IgE) that is like a peanut allergy which can cause anaphylactic reactions (throat swelling, breathing issues, drop in blood pressure). There are some blood tests that are about 50% accurate, along with skin scratch tests (also not super accurate. 2. There is celiac disease (autoimmune that when exposed to gluten attacks the intestinal track, skin or brain) triggered by gluten (I gave you the blood tests: TTG, DGP EMA). 3) Non-celiac Gluten sensitivity or Intolerance which is like celiac in terms of symptoms, but no antibodies are generated and intestinal damage does not occur. This diagnosis is reached when you have failed the first two as there are n tests for it.
Read through the DH section of this forum for symptoms and tips.
I hope this helps.
Finally, if you really suspect DH, you can always go gluten free. Keep in mind that you need to be strict and you need to adhere to the diet for at least six months to a year.

I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms. As we know, no symptoms does not mean no damage being done. I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on. I never did get the intestinal symptoms others get.
This for me is the hardest part of having Celiac's, figuring out what did it. Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse. It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care.

I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive. All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given. My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing. Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth. I have not developed any more AI diseases than the 4 I already have and I call that a big win.
I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing. I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it. If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back. Repeat endoscopy's are really for those still having problems.

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!